I get weighed and measured pretty regularly these days. Not just externally, but internally too by way of my blood tests. One of the measurements that I haven’t mentioned yet is my height. When I was being checked out for the Colorectal investigations, they measured my height in my socks. I came out at five feet seven and a quarter inches. That surprised me, because when I was 22 I was five feet six and a half inches; when I was last weighed and measured at my GP surgery I was 169cm, which is five feet six and a half inches. I was under the impression that as you get older you shrink rather than grow.
This measurement got me thinking about observations that I had noted recently, especially among the walking footballers. Many of them seem to be shrinking, and I put that down to their old age being more aggressively stunting than mine. I do seem to be noticeably taller compared to some of them than I was last year. Is this a side effect of the hormones? I’ll have to check with my Stampede research nurse, to see what she had me down as 60 weeks ago. It might help explain some of the less than perfect hand-eye co-ordination that I have begun to be aware of as well.
Of course it could simply be that the Colorectal Department’s measuring stick is wrong.
Anyway, while I’m on the colorectal subject rather than the prostate subject, I have been finding my AIN3 growth becoming quite uncomfortable. It gets worse the more I sweat, because the pad in my underwear gets wet, stays wet, and loses shape. As if to make matters even worse, I have been following the advice of the Radiotherapist Review, and using cornflour instead of talc to help keep my dainty bottom dry. I’ve only been using it because we’ve got a lot left over from the radiotherapy days, and it seemed a shame to waste it.
Of course sweat is made up of water and salts. As any viewer of Great British Bake-Off or its clones will tell you, water + salt + flour is the basic recipe for flatbreads. So every evening I have been finding the equivalent of chapatti crumbs in my underwear. Once I realised that, I moved on to a mildly medicated talc instead, which still had a little doughy texture to it if I over-used it.
The discomfort wasn’t going away, so I rang Colorectal to try to see if they could recommend some cream or similar to ease the discomfort. They said to speak to my GP. So I spoke to my GP, and he suggested haemorrhoid cream, but added a rider that as that includes a mild steroid I should double check with Colorectal first. So I rang back to Colorectal and they said that the surgeon had finished for the day (Friday), and wouldn’t be back until Tuesday as it was August Bank Holiday weekend. But the lady said she’d email the question to him. Meanwhile my surgical procedure is on the “Urgent” list, which means I should have my surgery in September or October. I wasn’t too impressed by the “or October” bit.
Going back to my conversation with the GP, I had also been in touch with Oncology about a couple of drugs that Cathy had read about in a newspaper article. These were medroxyprogesterone acetate, and cyproterone acetate. These are used to help reduce the sweats, or “flashes” as I saw them referred-to on the cyproterone Wiki page.
The receptionist had passed the query to one of the other oncologists in the absence of my holidaying usual oncologist, and he had come back suggesting that cyproterone acetate was their preferred option. But, and there’s always a “but”, I need to check with the Stampede research nurses first to see if there were any conflicts with the research regime. Fortunately there weren’t, and I was advised to contact my GP to get the prescription. Of course my request to the GP was sympathetically heard, but he quite rightly needed confirmation from the hospital that it was their idea, and not my idea, to ask him to prescribe them. I also told him that having read up the side effects, I only wanted a low dosage please, just to give me some relief from the sweats. So another “over the Bank Holiday” message was left, this time for the Research Nurse.
She rang me back late on Tuesday afternoon. There will be a 4-weeks’ worth prescription waiting for me at her office tomorrow morning, to be collected from the hospital pharmacy. One of the Oncologists has written a letter which will go to my GP, so after that four week trial, I can get a repeat if I find it a positive move. I’m hoping that it will be of benefit, as the Bank Holiday weekend turned out to be officially the hottest ever late August Bank Holiday and I was once again dripping. Literally dripping.
I will take some responsibility for the drips, if not for the sweats. I enjoy a genetic trait passed down from my maternal grandmother whereby when I eat uncooked cheese it brings me out in a mild perspiration across the forehead. When I was young, free, and single, and if I had a few pence spare in my food budget, I would buy a wedge of Danish Blue, and eat the whole portion in one sitting. I loved the tingle of sweat on my brow, which was similar in a very mild way to the chilli sensation. I graduated through Stilton, Cambazola, Gorgonzola, and just for the smelliness (over-)ripe Camembert and Brie, and most points in-between, as my budget evolved through the years.
Over the hottest late August Bank Holiday weekend on record Cathy and I had bread and cheese on both the Saturday evening and the Monday evening. It was only as I prepared for bed on Monday night that it dawned on me what I had done. A predisposition to sweating in response to eating ripe cheese had been turbocharged into one of those “you’ve only got yourself to blame” sweatfests of deluvial proportions.
So to the prescription. Cyproterone acetate comes with a leaflet describing the possible side effects. It made for very scary reading, including as it did such things a heart attacks. I was genuinely in two minds about taking it. But what the hell, if I found that it disagreed with me I could always stop taking it. I posted a question on the Prostate Cancer UK forum about it, and was vaguely reassured by a response that told me that as it is a hormone drug then any likely side effects I’d get from it would already have shown up from having the Prostap jabs.
It is a very chalky “dissolve in the mouth if you don’t get it down quick enough” type of tablet. The first day, I took it after lunch (“with or after meals”), and by 4.30pm I was dozy and went for a lie down. Cathy woke me at seven to say that she was hungry, and was going to start dinner now. It does say that one of the side effects was sleepiness, and if affected not to drive. We chatted, and Cathy thought it was more likely that I’d had such disturbed sleep for the past few nights that it was probably nothing to do with the drug.
Anyway, monitoring the effect for the first three days, I initially found it to be effective for about twelve hours. It does suppress the sweats, but doesn’t completely stop them. It also seems to help me sleep better. By taking them in early afternoon I noticed that I was waking up at about 2.00am with a dripper, whereas when out shopping in late afternoon what felt like it was about to become a dripper didn’t come to anything. So I shifted to taking them after my evening meal. That was a positive move.
But still the waiting for my AIN3 treatment goes on, and on 2nd September I rang in to try to get some idea of my “Management Plan”. I spoke to a Nurse Specialist, who wasn’t really able to enlighten me much, apart from confirming that it will be another biopsy along with an ultrasound scan at the same time, to be followed later by a course of treatment appropriate to what they find next. Which in turn meant that she couldn’t tell me how intrusive the subsequent surgery would be, and what the recovery regime would entail and for how long, if indeed it happened at all.
If it happened? Well, she said, they may have to go down the chemotherapy route if they can’t operate. Cheery news indeed. Meanwhile, if you find it helps, by all means use Preparation H to help soothe the discomfort, seeing as they only advise against such things if you are undergoing radiotherapy. A call to the Admissions Office to try to get a time-scale was met by an answering machine. I left my details for them to call back.
Fair enough, they did call back first thing on the Tuesday morning. I wasn’t out of my bed by then, so they left a voicemail message. Which said, in a very bright and cheery voice, that they didn’t know when my appointment would be. So I spent the week waiting in vain for an appointment letter from them to drop through the letterbox. By the Saturday lunchtime I had resolved that I would ring them again on Monday afternoon.
In the meantime I chatted with my golfing buddies, and it transpired that one of them was offering to go on standby to take my place on our annual trip to France in late October if I couldn’t go. I resolved to do my best to rearrange the operation date if possible, and if needed – maybe a swap with another patient – in order to join in the event. I’d missed last year’s opportunity due to radiotherapy, and really wanted to go this time. After keeping an eye on the Brexit exchange rate, I even bought €500 at a moment when it looked to be as good as it was going to get for the foreseeable future. It was a rather sad €1.095 to the pound.
So to the following Wednesday 11th September, more than another week gone by with no contact from the Hospital. My bum was getting more and more uncomfortable, and as that pain developed you couldn’t help but think that a change for the worse in one respect is probably a change for the worse in all respects. By the time they get round to my “urgent” surgery, my pre-cancerous lesion will inevitably have become cancerous. I just know it, deep inside. Anyway, this time I left them another message about swapping dates if my surgery clashed with my short golfing holiday.
The added discomfort from my bum means that I am not getting much sleep, it genuinely keeps me awake at night. I had given up taking paracetamols at bedtime because they were meant to help with the sweats, but now that my Cyproterone Acetate is working round the clock (yippee!), I had stopped taking them. I resolved to start taking bedtime paracetamol again, and bingo!, it worked.
The cyproterone is interesting, as I still get the flashes/flushes, but usually they are a minor bead of perspiration on my brow, neck and builder’s cleavage, and then they are gone. Occasionally I’ll get a more moist moment, but it is really nowhere near as bad as it was before I was given them. But that doesn’t help with my sleep pattern, because the sensation of the flush has always seemed more noticeable when it is waking me up, a real tingle all over, and it still does that. It’s just that the sweating doesn’t follow.
I’ll confess to a little bit of depression on Friday 13th September and Saturday 14th. On both days we were visited by the postman. On the Friday two letters were propped up on the doormat, the one we could see addressed to Cathy, the other tucked behind it with the NHS logo showing. Is it my appointment? No, it’s Cathy’s result of her recent eye test. On Saturday there was just one letter, again with the NHS logo, but this time addressed to me. I opened it nervously. It was advising me that I was coming due for Bowel Cancer Screening. Another disappointment. Hopefully doubly so as my colorectal adventures should mean that I don’t need to take part in the screening programme.
Anyway, it’s not all doom and gloom. My two-pint bladder seems to have returned. In fact it has expanded, and now seems capable of two and a half pints. We went out on Saturday night to watch a band in a nearby pub, and at the end of the show, and at the end of my two and a half pints, I got up to go to the gents. For the first time since we got there. And I only went because it was a ten-minute drive home and I didn’t want to risk discomfort. Amazingly, I next had a pee just before I went to bed, and slept through until gone eight the next morning before I had to get up.
So no sweats, no panic about peeing… at least some things are looking up. I just wish they’d hurry up and sort out my bum. I’ve got a more accurate analogy for it now. Imagine you have a door in your home, and you wedge it open. Then you decide that you want to shut the door, and you casually kick the wedge out of the way, but without you realising it the wedge gets stuck between the door frame and the bottom of the door, leaving a little gap for the cat to sneak in and strip the wallpaper off from above the back of the sofa. Well, that little gap is what my lesion is leaving when I try to shut my “back door”. It leaks. And it aches. And sometimes it hurts. And it’s always there.
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